u/missCarpone

I'm so happy to have landed a therapy spot with her, she's very knowledgeable about ME/CFS and has several severe and very severe patients.

She's fine with appointments on a as-needed-and-possible basis. She's fine with short appointments. She's fine with telehealth, either video call or phone call. And it's covered by healthcare.

The first appointment is next week, 30 minutes, I'm really hoping I'll be able to do it.

I was getting desperate to talk to someone knowledgeable and she's basically the 🐐. And her voice was very kind.

Also, I found a purely telehealth online clinic specializing on Long-Covid, ME/CFS, MCAS and POTS, I was able to book an appointment for August.

The intake process so far is very streamlined, automated, not to say rote, so I'm not that confident they'll be able to help me, and at 250€ per 30 minute appointment (including prep time)... But we'll see.

I'm very severely affected by ME/CFS this bedbound and unable to be transported barring life threatening emergencies. This is foreseeably my life.

So I lost a filling and have a very small cavity and a dentist on a bedside visit said silver diamine fluoride would be a good choice for now. It's apparently used very successfully in children's dentistry to stop progression and strengthen tooth material.

I've not been through the whole diagnostic gauntlet for MCAS but my rheumatologist is pretty sure I've got it as avoiding histamines and anti-histamines both improved symptoms like GI-issues, brain fog anf fatigue (to a limited extent). This was like a year ago, so I've not that much experience with MCAS.

Anyone here have experience with silver diamine fluoride? I'm a bit worried because technically the silver ions are a heavy metal and I'll be bound to swallow some in the process, especially as the application will be done bedside without a suction system.

And yes I'm aware that MCAS reactiveness is very individual.

I'm just really scared of lowering my baseline permanently through an adverse reaction. But I need to do something.

Hi everyone,I feel drawn to comics, does anyone have a recommendation for how or where I could find help in learning? Requirements are that ressources be digital, accessible online on a smartphone. I can draw on paper but I can't read paper books. Thank you!

I’m on day 5 of a migraine and post-exertional malaise (PEM), with severe one-sided neck tension — and painkillers aren’t working:

Triptans don’t work at 10 mg; and with MCAS they’re suboptimal anyway.

Paracetamol doesn’t work — not as a single 500 mg dose, and not when I took a second dose 2–3 hours later.

Metamizole/Novaminsulfon doesn’t help either, neither 500 mg nor 1000 mg.

My old trusty go to, aspirin, and ibuprofen, don't work because MCAS.

On top of that, because of my gastroparesis, gastric emptying is delayed, especially in the evening and at night, so tablets just sit in my stomach like stones.

I’ve written to my GP’s office, but haven’t heard back yet. I think they're closed.

The SIGHI medication guide mentions older H1 antihistamines in this kind of situation? Anyone got experience with that?

Hello, does anyone here have experience with the following situation?

I have very severe ME/CFS, with gastroparesis and MCAS, also migraines.

I’m on day 5 of a migraine and additional post-exertional malaise (PEM), with severe one-sided neck tension — and painkillers aren’t working:

Triptans don’t work at 10 mg; and with MCAS they’re suboptimal anyway.

Paracetamol doesn’t work — not as a single 500 mg dose, and not when I took a second dose 2–3 hours later.

Metamizole/Novaminsulfon doesn’t help either, neither 500 mg nor 1000 mg.

On top of that, because of my gastroparesis, gastric emptying is delayed, especially in the evening and at night, so tablets just sit in my stomach like stones.

I’ve written to my GP’s office, but haven’t heard back yet - they're closed today.

The SIGHI medication guide mentions older H1 antihistamines in this kind of situation?

Who am I today?

My name is person-with-ME.

Today I feel like a felled tree,

rotting in a secluded meadow.

Sometimes I am a graceful swan.

Sometimes I am a freshly hatched chick.

But always, I am grieving.

I ask the world, "Do you have a space for me?"

And the answer is,

a felled tree,

rotting in a secluded meadow.

---

I wrote this poem using a prompt from Joseph Fasanos book "The magic words", full of prompts or even templates. I consider it a disability aid and wasn't too proud to use it because after years of being too sick to write poetry (after 20+ years of writing) it allowed me to create again.

Living with very severe ME/CFS, life has become very small and mostly centered around the illness, coping, resting. Being able to write a couple of poems today, my 4th day with terrible, medication resistant migraine, gave me a bit of joy.

The prompt is called "Who am I today?".

It's a re-imagining of Cinderella, where Ella becomes a ghost, tied to the estate, which she can't leave. I resonate hard as a bedbound person. I'm only on page 48 out of 193, ebook.

edit: Gasp! The author was housebound due to Long Covid!

Don't know if I'll finish it because the style is gothic, erie, but I find solace in the recognition of myself.

Yesterday I told a caregiver my life is a terrible story, every day, which is true insofar as I lost so much to this illness: Autonomy, mobility, ability to work, relationships, sex, the ability to.communicate, the self I was before...

That loss is the underpinning of my day-to-day experience, which, though repetitive, is relatively peaceful, smaller upsets not withstanding.

I'm fed and well cared for, I live in a relatively quiet place, I was able to start LDN, my gastroparesis is pretty tame for now, my pain is generally well-managed... I even get to assist others in small ways sometimes, or eat a piece of cake...

Both aspects are true at the same time. It's weird.

I feel like a ghost, seen only by those who enter the abode I haunt. To everyone else I've faded from sight and their lives. I'm tiring of fighting the fading, of reaching out to people who grow quiet, busy with their lives. That's a sadness, too.

I've been very severe, fully bedbound for 19 months. And additionally impaired by severe knee joint contractures for 16 months which made walking impossible physically.

So when last night in my dreams I found myself wobbling through corridors and standing in front of a bathroom sink - needed to lock the knees for that - and even taking stairs I was so happy! Both in my dream and when I woke up.

I was surprised because I sometimes was an invisible observer looking at myself, and I've not seen myself in a big mirror for all the time I've been bedbound - the brain basically rendered that view from me seeing my legs in bed. Knobby knees, stick legs.

And in the dream I was afraid of PEM but was too excited to care.

Thought you'd understand my joy. I'm not going to share this with able-bodied people though.

Shoutout to whoever mentioned André Norton recently in this sub. I'm very grateful!

I've been reading SFF since, oh, 1980 and this is the first I heard of her. I grew up in Europe so maybe that contributed to her passing me by. F

inally, the name of that cat (Olo... the Destroyer?) or on his collar, in Ilona Andrews "Sweep" series makes sense!

And I find a lot of her books are on Kindle Unlimited, which is great because I'm a voracious reader.

I just read "Year of the Unicorn" and slogged through the medieval-seeming prose, was irked to no end by the FMC dithering and internal monologue, but relished the polished writing and story-telling. And the interesting take on Faery and Sidhe, or maybe Avalon?